Caring for children and teens with a chronic illness requires patience and an acceptance that certain life-style changes will have to be made. Additionally, you also have the responsibility of making sure that family dynamics and routines move towards a new understanding of what “normal” is. Finally, whether your child is diagnosed with lupus as a child, or as a teen, you have the responsibility of helping them transition into adulthood, armed with an understanding of how to manage the impact of lupus on their life.

There’s a lot to think about and a lot to do, but the following steps will help you stay on track.

Track your child’s health and keep them involved

• Learn as much as you can about the disease, so you can recognize how it is affecting your child. The Lupus Foundation of America’s website has several sections and resources geared towards children and teens living with lupus.
•  Track and learn to recognize changes in your child’s day-to-day health that may be a warning sign of a lupus flare. This is vital when creating a care plan for your child.
• Create a daily care plan and start a care file to help you respond to your child’s health needs and communicate with your child’s healthcare team. You may want to add specific pages that are relevant to your child’s school and other activities, like important contact information and any specific health needs or reminders.
• Talk to your child about their symptoms. Keep it simple and use age appropriate language. Small children may not understand the nature of lupus, but most likely they are aware that something is wrong.
• Involve your child in making healthy choices about care needs. This is a positive approach to accepting the illness, a little at a time. Make it fun and offer small rewards to acknowledge your child’s participation in his/her care.
• Encourage your child to participate in planning visits to the doctor. Allow him/her to talk to the doctor, which can help decrease fear about the illness.
• Establish a caregiving routine. Encouraging your child to participate in his/her care (as safe and appropriate) can provide a sense of security, control and acceptance of lupus.

Find a shoulder to lean on 

To help you take care of your child in the best way possible, you need to take care of yourself. You can’t do it all. Determine who you can turn to for support. Sometimes, it takes a community to help a family live as normal a life as possible in the face of chronic illness. 

How can you find support and encouragement for your ill child?

• Stay in regular contact with your child’s health care team and talk to them about how your child is coping with the disease.
• Explain the disease to your child’s teachers. Talk to them about any special needs and ask if you can help plan your child’s schedule and schoolwork.
• Make sure the school nurse is aware of your child’s illness, medications, and other essential health needs.
• Talk with the school counselor about support and encouragement for your child.
• Ask for help from friends and family members. Let them know what would be helpful to you and your child.
• Encourage your child to have normal relationships with peers. Reach out to other parents for social support.
• Support groups can help parents strengthen coping skills and reduce stress.  If necessary, talk to a mental health professional who is familiar with issues surrounding chronic illness and children.

Understand, and help your children express, the emotions caused by lupus

Sometimes, children are not able to express what they are feeling, so it may be up to you to help them understand and express their feelings appropriately. This is true for children with lupus as well as their siblings, who may also be having a hard time emotionally.  

• Ask your child or children how they are feeling. Help them to understand that there are no right or wrong feelings, and to express these in a healthy way.
• Not talking about feelings may exaggerate anger, confusion, withdrawal, or fear. Sometimes, children may act out if they are not able to tell you what they are feeling. Ongoing negative behaviors, or extreme withdrawal and isolation from the family should be discussed with the doctor.
• Children need to know that the disease is not their fault. Just like adults, they need to learn positive ways to cope.
• Siblings can also feel angry, confused and fearful. They may be afraid that their brother or sister will die. Ask them how they are feeling and help them understand how the disease is affecting the child who is sick. They also need to know that they cannot catch lupus. Siblings need to know that they are equally important in the family.  If it makes them feel good, encourage them to be a part of caregiving. Give them choices and reward their efforts.
• Maintain normal family activities. Family fun, without focusing on the disease, is healthy and necessary.

Specific tips when caring for teens             

Teenage years are a time of transition from childhood to adulthood. Teens are developing a new identity that is already emotionally intense and demanding. Lupus can interfere with an adolescent’s development of independence, peer relationships, and day-to-day normal activities. Adolescence is stressful for healthy teens; add the stress of living with a chronic illness and adolescence can be overwhelming.

What can parents, as caregivers, do to help their teens learn to manage their health?

Encourage healthy communication and acceptance of feelings.

• Talk to your teen about how the disease is affecting him/her. Ask your teen what is most worrisome at this time.
• Encourage your teen to talk about feelings, whether it is with you, a friend, a school counselor, or other teens with lupus. Certain feelings, such as anger, sadness, anxiety, and fear of the unknown, are normal.  Talking can provide a sense of relief and new perspectives on living with lupus.
• You can also encourage your teen to keep a private journal as a healthy outlet for their thoughts and emotions.
• Transitioning from diagnosis to a life with chronic illness will bring changes. Revisit expectations and routines with an open mind.
• Teens experiencing ongoing signs of depression and are unable to adjust to long-term health issues, need help.
• Talk to the doctor to determine if symptoms are related to the physical effects of lupus, medications, or the stress of coping with the disease.
• Talk to the doctor about treatment options, including seeing a mental health professional. Seeing a counselor provides teens the opportunity (and privacy) to talk about things that they are not ready to share with others.
• A professional can help teens develop appropriate coping skills to live with lupus now, and prepare for a healthy transition from adolescence to early adulthood.

Involve your teen in activities that promote independence and responsibility over their own health.

• Encourage your teen to take responsibility for the management of their health. Involve him/her in determining a care plan and making healthy choices. If they own the plan, they will be more likely to adhere to it.
• Be careful not to do too much for your teen. The more you do, the less your loved one does, and this may end up hurting their physical and emotional health in the long run.
• As your teen takes on more responsibility for their health, it will be important for the doctor/patient relationship to change as well. If your teen is interested in taking a more active role, be prepared to back off at appointments, so they can carve out a new relationship with their doctor.
• Build your child’s self-esteem. Help your child to recognize strengths and build on them. Acknowledge their successes.
• Staying involved in peer relationships and activities is important to your teen. Living a life that is as normal as possible can add to your child’s sense of independence and will decrease their sense of “being different”.

Stay on top of the practical aspects of coping with lupus, and encourage them to do so as well.

• Stay involved with your teen. Are doctor’s orders being followed? How is your child doing in school?
• Be aware of limitations caused by the disease, including pain and fatigue, changes in appearance, and side effects of medications. For both of you, accepting this “new reality” takes time. Be patient.
• Learn as much as you can about lupus, but make sure your teen also takes on the responsibility of this knowledge. The more they understand what is happening to their bodies, the more empowered they will be to cope with the effects of lupus.
• As you communicate with insurance companies and various specialists, don’t be afraid to let your teen learn about the paperwork and practical aspects of handling their healthcare. Keep them involved so they can manage these logistics confidently in the future.
• When your teen turns 18, you may have to fill out and sign special forms to ensure that you can remain involved in the management of their health.  Talk to your teen about how involved they want you to be, and speak with their doctor about any forms that need to be completed.